Friday, January 21, 2011

XMRV in ME/CFS: New Facts and Findings

I'm still a bit down this morning, though maybe better than yesterday. Unfortunately, I just had to shovel a little again. My 12-year old son did most of it (the kids had another 2-hour delay this morning), but I wanted to clear a spot to park the cars. Thank goodness my husband gets back today!!

A couple of days ago, I posted links to a summary of a recent XMRV presentation. The summary was written by Lannie in the Lymelight, and I think she did an excellent job summarizing a lot of information. I encourage you to click on the link and read her entire two-part summary. But, in the middle of the night, as I was struggling to get back to sleep (rough night!), it occurred to me that some of you may not be up to reading and understanding the whole thing, yet I think there is some critical information in there. So, I thought I'd post a few highlights here for you. If you're really badly brain-fogged, try just reading the parts in bold!

The following statements are excerpted directly from Lannie's summary on her blog (my own explanations or clarifications are in parentheses):

As most of you know, the detection of XMRV in blood cells of patients with CFS was first published in Science, October of 2009. At the time XMRV RNA/DNA was detected in 67% of patients with CFS, XMRV protein was detected in greater than 85% stimulated/dividing T and B cells, and an antibody to XMRV Envelope was detected in over 50% of CFS patients. Exactly one year later Mikovits was published again, after improving on original testing techniques to find XMRV infection in 98% of the original cohort.

(There has been a lot of media attention paid to recent negative XMRV studies.) Both Whittemore and Mikovits addressed the skeptics – confidently, calmly and articulately. Whittemore put it best when sharing what Mikovits has many times reminded her, “positive papers take forever – months or even years to publish. Negative papers only take a few weeks (to publish).” (The two presenters described in detail why the negative studies do NOT contradict the positive ones and why contamination is the cause of the positive results).

Even with skeptics galore, hope is not lost. Enter a second study, confirming what Lumbardi, Ruscetti, Mikovits, et all proposed in Science, October 2009. This paper, known as the Lo/Alter for Dr. Shyh Ching Lo and Dr. Harvey J. Alter, found MRV, closely related to Polytropic MLV, in 86.5% of CFS patients and 6.8% of healthy controls.

Again, understanding the nay-sayers to the Science publication, the Lo/Alter teamrigorously ruled out contamination. They are the only other study, like that published in Science 2009, that controlled its own samples. If samples are not pristinely maintained (i.e. some might be frozen and thawed REPEATEDLY (updated 1/20/11), "the results will be negative," confirmed Mikovits.

Another study, unpublished, but shared with the WPI is from the Cheney Clinic in North Carolina. He tested a group of 47 patients, all families, with 81% positive for XMRV. The findings in this group are astounding. The ratio of male to female was identical. This is NOT a woman’s disease! Half of all family members with a CFS case are XMRV+. And then the list goes on and on of parent/child correlations with CFS, XMRV and Autism. (I previously reported on on this family study which I still find astounding).

(Another family study has been conducted by WPI with similar results). A quick summary provided by Dr. Mikovits regarding families. She can confirm, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple members.

What we know about XMRV is that it integrates into human tissue, demonstrating that it is a human infection. We can confirm it is NOT an endogenous virus to humans. It is in fact a new human retrovirus. However, how it got into humans is still unclear at this time.

In discussing tests, another very important take away was that if you test positive you are positive. If you test negative, they are not able to confirm it is absolutely negative. Until there is further understanding of the XMRV lifecycle, they can not confirm this.

So where are we seeing XMRV? The disease association seems limitless. It’s showing up in every corner of the neuroimmune world.One private practice shared it’s associations with Mikovits and the WPI team. This practice started testing its neuroimmune patients and soon found they were treating XMRV positive patients with CFS, Fibromyalgia, Chronic Lyme Disease, Multiple Sclerosis, Parkinson’s Disease, ALS, the list goes on. XMRV research has concentrated around ME/CFS to date, but larger studies on the presence of XMRV in these other neuroimmune diseases are coming.

In the presentation they referenced a study where 65 Chronic Lyme Disease patients were tested for XMRV, and 100% came back positive. This was the most reactive group the WPI has seen. That is a higher rate than ME/CFS!

Treatment: Three antiretrovirals showed promise amongst 45 compounds and 28 drugs approved for use in humans. Those three include Zidovudine(most know it as AZT), Tenofovir and Raltegravir. The study showed all two-drug-combinations showed efficacy against XMRV in vitro. (NOTE: The only studies to date have been in vitro studies (i.e. in the lab) - there have been no patient clinical treatment studies for XMRV yet.)

TREATMENT: Dr. Brewer, an infectious disease specialist who’s spent much of his career in HIV but more recently in ME/CFS and XMRV, has used 2 and 3 drug combination antiretroviral treatments with a CFS/XMRV+ patient sample of 25. The results have been a mixed bag among the patients on ARVs anywhere from 1-9 months. The expected Herxheimer response occurred in some as would be expected. Symptom reduction has been reported, however majority reported feeling “about the same.”She (Dr. Mikovitz) has noticed a common theme of patients feeling better around 6 months, followed by a return of all or most symptoms. It sounds very similar to what happens to many on antivirals. She went on to ask herself and her team “how can we add immune modulating supplements to keep up the response beyond 6 months?” That might be the next step we see in antiretroviral (ARV) discussion.

Well, that still turned out longer than I intended, but I believe those are the highlights, for those of you with cognitive difficulties understanding the entire summary. The bottom line is definitely optimistic for all of us with ME/CFS, as well as other neuroimmune diseases.

This post is a part of XMRV Bloggerama Day, intended to flood the internet with FACTUAL information about XMRV, to counter all of the junk that's been circulating recently. Join in with your own post! The information page even includes a template and links you can cut and paste, if you're not up to writing something yourself.

Thank you, thank you, thank you! I've been putting off reading the original posts since I've had a foggy week this week. The summary was awesome. I'll be reposting a lot of this stuff when my brain gets going again. First I think I need some stronger pain meds so that I can catch up on some sleep.

Very informative. Thank you for helping to spread awareness. We desperately need funding to enable the research to continue. Without funding 17 million people will remain sick and possibly contagious. The research must continue!

Thank you for your blog today and all the great information it contained. This is an issue that affects the entire world. XMRV needs to be studied vigorously to both help those who are already ill and protect those who are not.

Thanks for the information, Sue. I didn't know that it was common for people to feel improvement on anti-virals after six months but then regress to where they were. That was exactly what happened to me on Valcyte. As I approached the six month point, I remember telling Tony: "I'm positive I'm going to get well." And then the effects reversed.

I had no idea until I read this that this is not uncommon with anti-virals.

If you follow the link to the full summary on Lannie's blog, Part 2, and read toward the end about treatment possibilities, you'll see more details about Dr. Mikovitz's hypotheses about what other kinds of treatments might be needed to "fix" the immune system and mitochondrial dysfunction in order to support the anti-virals (or antiretrovirals).

Sue...Thank you so much for writing this summary for us. A Dr. Brewer was mentioned toward the end....do you know if he is the Dr.Brewer from Kansas City,MO?I believe his first name was Joseph. Again thanks...

I admit I don't yet follow information about XMRV yet. It is just another thing I don't care to think about. I suppose if I could afford to be tested, and I suppose if there were a real treatment, and if I had a doctor in the know about CFS I might feel differently.

I appreciate your blog of information that I will be able to refer to should that time come!

SUE THAT IS DR BREWER>>>>>>>I HAVE BEEN TO THIS DR ONCE BACK IN 2002 WHEN I STILL HAD MEDICAL INSURANCE>>I COPIED THIS FROM MY SEARCH>>>> Joseph Brewer is an Infectious Disease doctor who practices in Kansas City. Dr. Brewer has worked with both HIV and CFS patients for 25 years. He also has treated many Lyme patients. As far as the Patient Advocate knows, Dr. Brewer has the most long-term experience in dealing with both HIV and CFS, putting him in the catbird seat for diagnosing and treating XMRV and its variants.

It about an hour and 1/2 drive from my home to his office in KC. I need to call tomorrow and see if I could get in as I only have Medicare coverage now.......again THANK YOU for all you do...My brain is too tired to search out the information that you provide to us and I know it takes you a lot of time....Peggy in MO

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.